Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,
MRI Scan Results
Results letter says “oedema-like marrow signal in tip of T10/11/12 spinous process with possible destruction. Likely Osteomyelitis” does not sound good does it !
Baclofen Pump Refil.
Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure sore. We are lobbying for this in future to be done at consultants Peterborough clinic. We will fight them on the beaches, we will fight them ...
After two abortive attempts, no ambulance supplied, got Hubby’s scan done on Thursday. Scanning unit at Peterborough were very supportive, used some initiative , did a scan of his whole thoracic spine plus upper lumbar to make sure surgeon has full picture including the new hump that has appeared on Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has all the info he needs to make a speedy assessment. We now await the results. He will send for Hubby for an out patient appointment first, so another long ambulance trip for a 10 minute consultation, not happy about that. Why don’t they do stuff like that using video calls. I know they like to see / feel the patient but in this case there is more danger to Hubby travelling all that way than the value the consultant will get out of the consultation. Unless they will admit straight away.
Hubby in varying levels of pain, keeps complaining of different kinds of pain in different locations. Eg keeps getting sharp pains in his head, occasional stomach pain. His arms and shoulders are a worry, he is really concerned that he going to lose the little function he has. Neuropathic pain in his feet is bad at the moment as well. Been waking me up during the night because he keeps getting painful spasms in his right leg.
No word what so ever from the dude at the PCT in charge of getting us care provision. I have been told he is breaking the law not getting it sorted as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile I am coming under pressure to put Hubby in a nursing home because of my own health problems with my back. I find this an incredibly stupid suggestion on lots of levels, nursing homes are not keen on taking patient on that should be in hospital, Hubby needs a specialist unit for the severely physically disabled, but I know they will try and bundle him into a dementia unit which is totally unsuitable as he is as fully mentally aware. We are going to use some of our savings to get me checked out, MOT, when I get him in hospital, will rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers long term not knowing what is up. Probably a trapped nerve though.
Firstly get through this long weekend. After which continue to lobby GP’s & surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers afterwards, 1 battle at a time.